A poem written by Kia's mum, Stephanie:

You're not your gene mutation
Or the standing frame you use
You're not the words you do not say
Or the clothes you cannot choose
You are not your wheelchair
Or medications you must take
You're not the frequent seizures
Or the tortured nights awake
You are not the diagnosis
Or the specialists you meet
You're not the gaiters on your arms
Or the splints upon your feet
You're not your special glasses
Or the heart monitor inside your chest
You are the beaming smile you give
And your cuddles (which are the best)
You are your beautiful little squeals
Bringing mummy so much joy
You are sheer happiness in your eyes
As you bash your noisy toy
You're your kicks that splash the water
over the sides of the bath,
You're the teacher leading mummy
Down the right (and happy) path
You are the beauty in your laugh
And your pretty little feet
You're the humility you bring out
In every person that you meet
You're the softest touch of tiny hands
And the cutest button nose
You're the gentlest of breathing
When your gorgeous eyes start to close
You're the strength that stops your seizures
You're the smile that lights up the room
You make others reflect on how lucky they are
And banish tears and gloom
You are the pride in mummy's heart
While she watches as you grow
I know you can't understand these words but
Somehow I know you know